Images of an Invisible Illness 2016

A migraine feels likes a million pokers in my eye. It feels like there’s a cactus in my brain. It feels like I’ve completely lost, not only my direction, but my mind. It’s extremely hard to express these feelings to someone who has never had a migraine.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

This article really touched me! We have so much in common. I suffer from hemiplegic migraine diagnosed when I was 19 (I’m 46 now). After suffering 15-20 migraines a month,trying every med I could (I can’t take the usual preventatives, abortives, dhe,etc.),I found Topamax along with botox treatments were my saving grace. I still have breakthroughs that I can only treat with Excedrine Migraine if I catch it in time. If not,it’s off to the ER for the cocktail. This latest bout has me dealing with a migraine lasting,so far,since Aug. 13,2016. I’ve been in and out of the hospital, had neuros give up on me, tried acupuncture, and finally found a neuro who is on the case and sending me to a headache specialist and has scheduled a sleep study.
Believe me, I get it. My husband is a trooper! He gets me out of the house whenever he can because I can’t drive. My aura starts in my vision and numbness from my left arm down to my leg. Plus the left side of my face sags. The pain goes from a constant 6-7 barreling up to a 25. This time around, I can’t wear my glasses or contacts because they magnify the prism effect and double vision of my aura.
I’m a singer too and I refuse to stop. My band makes sure the lights aren’t pointing at me, and I push through to do gigs. But then I’m down for the next couple of days. A lot of people judge me because they don’t understand how I can do that and really have a migraine. I live in a cave at home, housebound because I can’t drive. I’m a busy body and can’t stand not being able to live my life! But people don’t understand unless they’re in our shoes. There has to be more awareness and education!! More research! I’ve had so many neurologists give me meds that could cause a stroke because they’re not educated.
I would love to be involved with what you do. Somehow!
Please let me know how I can help!
Stef

Stef,
Wow, our stories are so similar (although I don’t have hemiplegic migraines). So sorry you are stuck in a bad migraine cycle. I hope you are able to get into a headache specialist very soon. The ER is the worst and doesn’t really help the situation. I got to a point where the ER docs knew my name, but at least they knew I wasn’t a drug seeker!

I’m very proud of you for continuing your passion and being in a band! I’m secretly jealous! I can relate to those who don’t understand how you can be in a band and have debilitating migraines. I imagine while you’re performing you experience a break from your pain because you’re focused on doing what you love. If I didn’t have writing, I would be depressed. Every migraine patient deserves to have a life and have fun when they can, without judgment.

So I’d say there are three organizations that can always use more support or just even help with getting their message out through social media.

And if being involved in any of these organizations or events is not feasible for you, sharing info on these events and sharing blog posts that speak to you goes a long way in educating the public about migraine disease.

Thank you so much for your comments and desire to get involved!!
-Katie
Migraine.com

It’s quite a picture, isn’t it?! While I have some time without the giant migraine towel inside my head, no shards of broken migraine glass rattling around, and I, otherwise, feel rather well right now, I thought I’d share something I wrote inspired by those same cherry blossoms.
It is no longer spring, it is autumn, and you’ve missed one of those awesome day-long, lovely rainy days, that somehow did not make my head explode. (That was yesterday.) It does make one feel poetic…
Five Minutes – Paint
It is spring and, oh, how I wish I could paint! With colors or words I’d like to spread the wonder of nature! Maybe April is National Poetry Month because I am not the only one who feels this way? So, my feeble attempt at “painting” is this…
Cherry blossoms sprinkled on the surface of the Tidal Basin cannot properly be described in words, so I move on to the joy of a family gathering in this historic and beautiful place…
Again, neither the selfies nor these feeble words can capture the steadfast love I have for these women. As we traipse through the throngs of people who have come to capture the moment of cherry blossom perfection, which is marred by the presence of said throngs, it becomes obvious that there is a need to gather to celebrate this beauty. Though our gathering mars the beauty, it also, finally, testifies to it. It is not just I who glory in the petals as they rain down on our picnic spread! I am validated by the masses who have gathered with us.
Is there anything more beautiful in the natural world than cherry blossoms??? In the moment, only human wonder comes close. Over a lifetime? Only love.
And so I have strayed so far from my given topic, that I feel I have failed. How gauche my words are, and how tacky that is as a “paint” reference;)
Thanks for the pictures of your migraine world, Katie. The literal and literary. Be well.

@Maureen,
This is so incredibly beautiful. Will you do me a favor? Please go to our “Post your Story” section and share this? This area of our community doesn’t always have to be specifically about your story. We love to hear updates on your health, your thoughts on news and definitely forms of art that describe your migraine experience. Please share this!!

And of course I love your cherry blossom reference, having lived in DC for so long.
-Katie
Migraine.com